Starting Chemo September 2015; join us!
Comments
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Arista, I agree about money and insurance, but Neulasta weekly is not safe. You have to have 14 days at least between chemo cycles. That's why I'm getting Neupogen if needed on weekly Taxol. You can overdo it with the stimulators. I'm sure your doc would not do that, just a general statement. http://www.drugs.com/dosage/pegfilgrastim.html
Tessu, good for you! Hugs.
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I'm not getting weekly chemo. On Taxodere it sounds like I may even be at every 3 weeks. Good is if it is a doozy, more time to feel better. Bad is prolongs chemoville.
I'm blessed to have an MO who is not only a MD but certified in oncology which many are not, and PhD. Worth every cent I am paying cash for.
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Yes, totally different protocol for diff trxs. I got Neulasta every cycle with the red devil, irrespective of counts. I'm glad you are in good hands.
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Any of you ever wonder if chemo really "cures" cancer? I found this and sometimes it makes we wonder, especially when you hear of so many recurrences.
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Unfortunately, nothing cures cancer but we do go into remission. Those sites about chemo being evil and alternatives being better are misleading. If you're curious, consult with your MO so nothing you do is dangerous or interferes with your treatment. I think it's natural to think about other possibilities
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I'm not thinking there are things better than chemo, right now at least. I would think if something alternative was at least equal to it, we'd hear about it. But who knows really because too many people are afraid to just try the alternate that is being tooted, me included. Everyone wants to go with the tried and true unless you are wanting to be a guinea pig in the field and put your life more on the line.
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So true. Besides folks who absolutely don't trust western medicine, it seems like some folks turn to those alternatives when nothing else seems to help.
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I have to share this, "you're know you're in chemo when..." moment. When your neighbor mistakes you for your 62 year old nanny and calls you by her name. And then says that you look very similar to said nanny. !!!!
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I think alternative and holistic medicine and western medicine should compliment and not compete with each other. Sometimes I go one route, sometimes the other. I've had success with both. That said, I never considered forgoing surgery or chemo in my own case. However, if I were stage 4 and nothing was helping, I sure might try anything that was offered. It's just sad when it's an outright scam.
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I agree a scam! But we have to try everything we can eating healthy, using correct healthy products etc.. My friends grandma had breastcancer she had chemo and lived to be 100. So there's hope for us all.
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ooooookay...I dread asking this because I live in Florida and have extreme hyperhidrosis, but how bad is aluminum based anti/deodorant? Is there any alternative that truly works when you sweat all day long?
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I've looked and asked oncologists and there is no evidence-based research linking aluminum in deodorants to bc. I understand the FL problem. Short-term bad news is we can't use it during radiation
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I find if I wash there a few times a day, it's odorless. So I will have to that at my office, lol. At least it will be winter and not 100 degrees outside!
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I don't know if they make an anti perspirant that doesn't use aluminum. 😟
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Sure there is. I'm using one that does a good job for me, Jungleman. It goes on cakey because it doesn't have the crap in it to make it smooth but I'll take it esp because what you put on your skin is just as important as what you put in your body. Your skin absorbs a lot so in a sense not going through the digestive system to get broken down some, I think it's more important to use chemical free stuff on your skin.
https://community.breastcancer.org/forum/58/topics/834659?page=1#idx_19
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And for soap, THE best and MOST softening and moisturizing I've tried, and I've tried them all, also chemical free:
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If you have skin issues, the charcoal soap Goat Milk Stuff puts out is great stuff. They have other soaps for skin problems too. I have never had such soft skin in my life. These folks were on all the morning talk shows not long ago. It's a family biz which I love too as I love patronizing the small family biz folks who make outstanding products.
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I am using an Australian made product called Moo Goo roll on deodorant. It is 100% aluminium free and made with natural ingredients. It doesn't stop me from sweating but I have no BO. You can probably get something similar in the USA.
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thanks, ladies! I knew somebody would have a tip. I agree, there is no firm link but I'm always in favor of trying natural products if they work.
Any shampoo and conditioner suggestions? I tell you, the onco office is a hopping place to be on the weekends! 0 -
My mom had a benign tumor the size of a lemon in her armpit. Her surgeon said it was from the deoderant. We all use mineral salts now. You still sweat but you aren't smelly.
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I ditched traditional shampoo long ago. I like Apple Valley shampoo bars or Wen cleansing conditioner. No harsh stuff whatsoever in either. Also, Goats Milk Stuff puts out unscented shampoo bars. I haven't tried it yet. All their bars comes in sample sizes as do Apple Valleys. I'll never go back to traditional shampoo and conditioner again. In fact, I use Wen on my balding head. Very moisturizing.
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Hey my fellow BC sisters! I need your help. I need to change MO. I keep thinking I can't stand him and I know he does not like me. The idea that I would have to come and see him for the rest of my life (one that he obviously does not think will be very long). Has anyone ever changed MOs? This is one of the most traumatic things that has ever happened in my life. And I feel very alone. I think I made a major mistake by going to my cancer center for treatment. I should have looked at other centers in the area, not just the one my Ob/Gyn sent me to. Does it really matter if they are NCI affiliated? My cancer center is just a conveyor belt. Whether you do well or not is really up to you and your support system. And I have no one to protect me. Please tell me what I should do. I am desperate. I thought I could just get through chemo. But the idea that I have to see him for the rest of my life, makes me ill.0 -
Grey, based on what you've said, I think it is reasonable to consider changing MOs. To me, as you say, it is a long relationship, and you need to be comfortable with him or her. Personally, I think that is every bit as important as the affiliation with the NCI. My MO is not with a NCI (the closest one is fairly far from where I live) but it is clear that he keeps up with the latest research and care standards, and that does matter. Most importantly, he treats me like an individual, not a statistic, and takes the time I need to answer my questions.
Perhaps you could post a thread indicating your preferred location, and ask for suggestions of names, or tips from those who did switch MOs. Those on these boards who have been through switching MOs wold be a great source of suggestions. Some folks might sent private messages if they aren't comfortable talking about specific docs on the more pubic forum.
My advice would be to at least look into switching. Get a few names, make an apt or two, tell them you want a second opinion. Most insurance plans will cover a second opinion. Ask questions at the apt to see if you are comfortable. Be sure the (potential) new MO knows that you don't have a big support system and about the struggles you've had in treatment.
Go for it. You are your own best advocate, and you are strong and can do this.
HUGS!
Octogirl
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Grey, No question you need to change your MO. I've felt like this since day 1 you posted what a shit he is. You will be seeing this person more than your pcp going forth so you must trust and like someone. I wouldn't walk away, I'd run! Octo made a great suggestion. Post a thread on the forum asking for recommendations in your area. Contact your insurance company and get a list of participating doctors in your plan. When you get the list, call the offices to make sure they take your insurance. I've been through this when I changed MOs. It's not that I didn't like my first one. It was just too far away and the infusion center looked too hospitally for my liking. So I went through the list and found many MOs listed are no longer with my plan. So the list you get you need to double check and don't rely on insurance co updating the list. Many times offices don't update with the insurance companies and if they do, insurance co may not get around to updating their list.
I wound up opting to pay cash for a stellar MO. I'm not rich and it's a bite in my pocket being on disability but it's so worth getting someone you trust and cares. So please change your MO. No explanation needs to be given. You just don't make another appt and when you get a new MO, have them send the medical records to your new MO so he/she has your history. I'd also obtain all your medical records and give them to your new MO. It's not enough to just say your hx. That's what I did and it helped my new MO a lot.
Good luck!
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Grey: Sounds awful how your doc isn't taking you seriously and is so rude to you! Sounds like changing to someone else is probably the best thing to do, if at all possible. I wish you didn't have that stress in addition to all the SEs and work stress (((((((hugs)))))))).
I can share my experience: Where I live there is only the one hospital where you can get chemo; switching care centers would involve travel of several hundred kilometers each way, impossible for me. At the hospital here you first meet with a senior oncologist and get told your treatment plan (told, not discuss/select; I asked about Perjeta and was told it's only used for people with mets). Once you actually begin chemo, you see the younger (less experienced, probably) docs in the Infusion Clinic before every second or third dose, and those docs unfortunately change a lot. Some I feel comfortable with, some not so much. One was awfully condescending --- "don't you understand, the operation cured you, the cancer is all gone, the chemo is 'just in case'". Excuse me, that's not what I've read about grade 3 hi KI 67 HER2+ tumors.....If the infusion docs have questions, they can consult with the senior oncologist, but usually don't. I wish I had one single MO who got to know me and vice versa, but that's probably only possible in Helsinki where there are several larger medical centers.
There is no chemo teaching lecture, but you are given half a dozen pamphlets (that I was too stressed to read through beforehand). I was told about nausea and hair loss but the neuropathy, headaches, etc. scared me at first because nobody had mentioned anything about them (reason given: if we told everybody about all possible side effects, nobody would ever consent to chemo). Guess I should have read all those info pamphlets....And all chemo is given through peripheral ivs (lower arm veins) until those all run out; ports for first-timers like us are unheard of.
One plus, though, is that every patient is assigned a Cancer Support Nurse who stays the same throughout your treatment. Mine has been extremely supportive, and that has sort of compensated for the changing infusion docs.
I hope you can find a new doc who respects you and with whom you feel comfortable, Grey ((((((hugs)))))). You are so brave, I look up to you those times I feel I can't do this anymore. I wish I could help you more. (((((hugs)))))
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good point about the records, Artista. While I didn't change MOs, I did change ROs (before radiation started). I had some doubts about the RO I had chosen, but the deciding factor was that the NP in my MO's office told me (when she saw his name in my records) that she had worked in the first ROs practice and 'I wouldn't send a member of my family to him under any circumstances'. Ok then: time to change...
and as Artista points out, it was easy. Found a new RO I liked, and just signed paperwork to have all of my medical records from BS, MO and the old RO sent to him. No explanation necessary: the records are yours, and it is completely up to you to indicate what docs should receive them.
Finding someone you like may take a bit of searching, but as Artista points out, once you find someone who you are confident in and have worked out the insurance issues, the actual switching part is very easy....
Octogirl
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Grey - Feel confident and comfortable changing MOs. Do your research on both local cancer centers and MOs. Do you have any Nationally Accredited centers in your area? Here's more on certification: https://www.facs.org/quality%20programs/napbc
My center is accredited and I perceive a difference. Each case is reviewed weekly by a cross-functional team (radiology, surgical, oncology, etc). Their practices aren't perfect, but they are strong. Once you've done your research, be more energized by what you are moving to (vs what you're moving away from). Go for it - you deserve care you are comfortable with! <hugs>
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Southern: I asked about Perjeta because I noticed that you and lots of other people with HER2+ BC were getting it right from the start (which makes sense because Perjeta hits the HER system at a different place than Herceptin, so double attack). But at least at my local hospital, they simply won't give it before mets. But at this point I'm so worn down from chemo and lymphedema, I don't have energy anymore to question the treatment I'm getting; at least they're giving me Something which is much better than Nothing.
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My center is not a NCI. I went for a second opinion at Moffitt and absolutely hated it. It was like a cancer cattle call and was given inaccurate info by dismissive doctors and staff. I ran, not walked, out of there. I considered a 3rd opinion at MD Anderson but elected instead to start treatment asap. I would make the change.
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Okay, I should not have just spent an hour reading about what a ki67 99% score means. Apparenly, triple neg is often the only type so aggressive and some doctors will do prophylactic chemo 2 years after trx to try to kill anything left or growing since it responds o well to chemo. ?!?!?! Does anyone else have a ki67 score in the 90s?. Would I actually consider asking for another round of chemo?
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